Fighting for Emily

THE parents of a five-month-old baby born with a rare genetic condition have launched a fundraising campaign to send their daughter to America for life-changing surgery.

Ciara and Martin Toal, who live in the Grange, Armagh, are aiming to raise £100,000 by next November.

Emily – the youngest of their five children – was born in May and was diagnosed just two months later with TAR Syndrome.

This means she is missing the radius bone in both forearms, resulting in clubbed hands, as well as having curved ulna bones in her forearms and a low platelet count.

The disease is so rare that some years not one person is born with TAR Syndrome in Northern Ireland.

The couple say that without the operation, Emily will struggle with simple, daily tasks throughout her life, such as eating, writing and even brushing her own hair.

Although the couple had begun fundraising five weeks ago, their urgency and determination have increased after being told on Thursday that surgery in Northern Ireland, which they had believed was a possibility, is no longer carried out.

Said Ciara: “They have stopped doing the procedure in Belfast because of the low success rate. I was really disappointed because even though I knew there was a high chance of it not working, there was always a chance it could.

“Now we have to go to America. Doing nothing for Emily is not an option. The news has made us even more focused.

“We know it’s a lot of money to raise but this procedure would mean our daughter could lead a normal life.”

Ciara pointed out that the procedure which Emily needs, called ulnarization, has a 100 per cent success rate.

It was developed by a doctor from Florida who has dealt with cases of TAR Syndrome from around the world.

During the surgery, he is able to use Emily’s existing bone to improve mobility, strength and growth which will give her as close to normal hand and wrist function as possible.

The family has a Facebook page – TeamEmily – with a link to a JustGiving page where people can donate. To date, almost £5,000 has been raised.

A number of local gaelic clubs, including Pearse Ogs, St Colmcille’s Grange, Tullysaran and Madden, are holding Halloween parties to raise funds and Ciara says a major event is being planned for next year.